I was diagnosed with copd in August last year. On 20 th sept I was rushed into hospital and was told after a few tests n scans that I had a large mass on my right lung. I had lots of scans blood tests fitness tests and many other things as I had been told they could operate. I went for my op on 20 th November. They removed top n middle right lobe and part of bottom lobe they also removed my lymph nodes . When they removed the cancer they took the nerve that controls my diaphragm with it as it had grown round it. Now I have small part of right lung a swinging diaphragm and copd. I came out of hospital on 1 St dec. it is now four months on and have been told my copd is my biggest problem. I am trying to do everything right but obviously the breathing is the worst. I had never heard of copd and also when I was rushed into hospital with a pain in my shoulder I didn't know what was going on. I am 74 yrs old and smoked but stopped 30 yrs ago. I have been told my airways are working at about 35/50% can't be more specific. As you might expect it has been the biggest shock of my life and still can't get my head round it. Can you lovely people give me any idea as to what could be going on in my life. Sorry to have rattled on but apart from my family have not been able to talk about this. Thankyou regards jean

19 Replies

  • Hello and welcome. I have COPD stage 4. My lungs are working at about the same rate as yours. I still work part time at my job I was doing before being diagnosed 4 years ago. I have found keeping active is one of the best things. I'm sure more members will be around soon to help you along.

  • Dear me jean no wonder you are in shock and can't quite get to grips with things. Such a lot has been happening to you, COPD being one of those things. I am carer for hubby Pete who also has COPD and other health problems but is doing quite well considering. I am sure others will be on here at some point offering support and advice but you can also speak with one of the BLF nurses who can help. Just click on the red balloon next to British Lung Foundation.

    I do wish you well and hope you can get some much needed support. xx

  • Jean have they said whether they have got rid of all the cancer in the op? have they suggested Chemo?

    They have said that COPD is now your biggest problem...lets hope thats the although COPD has no cure, one can live a long time with even severe COPD

    Have a look at the threads on this site about copd...perhaps ask your doctor if you can go on a pulmonary rehab course....where you will learn LOADS about coping with COPD

    I wish you well after your op, which was a MAJOR op and so you will feel very poorly for quite some time....especially as we get older it takes longer to get over ops.

    Love Sohara

  • Hi yes they said they have got rid of the cancer. They offered me chemo but I turned it down. I am on quite a bit of medication. I have a nebuliser and another couple of inhalers. I have had brilliant aftercare I have the little finger machine that I measure sats n heart rate. My husband is my full time carer as I have osteoporosis. I have been reading comments on these pages and will continue to do so. Thankyou very much for getting back to me. Regards Jean

  • Hi Jean nice to meet you and welcome to the site. I really feel for you and it must have been a huge shock for you as it is very hard to get your head round a diagnosis like this. I hope the cancer has fully gone.

    As far as copd goes from your figures you are in the severe stage but try not to worry so much. With the right meds and a healthy lifestyle you have many years yet. Whilst copd is progressive you can do a lot to hold it steady and not progess or not much for a long time. There are folk in here who are severe and still lead a full active life though obviously a lot more slowly.

    If you go under around 20% you become very severe but it should be years yet before you do if you do at all. You will probably be 100+ by then!

    I am not surprised you haven't heard of copd because many smokers and ex smokers haven't. Everyone knows about lung cancer and tumours but not about the much more common copd. There needs to be much more awareness of it and only publicity can do this. Take care and stay with us here as between us we have a wealth of knowledge and we all help and support each other. x

  • Thankyou that is good to know. They have told me that they got all my cancer. I am coping a little bit better each day with the copd. It's my breathing I am trying very hard to cope with it. But have been told that it is still early days after my op. I have been reading lots on this site and it has helped me. Thanks again jean.

  • Hi Jean...I have very severe copd (FEV1 ~29%). I have been on oxygen for past 3 years and do very well. I am wondering if you have been given oxygen to use while you are mending? I am assuming you are quite weak from the surgery and on top, now have COPD! Seems to me a little extra ,oxygen would help you right now. Best wishes...jackie

  • Well Jean you have had major surgery which will take a bit of time to recover from,but you will get plenty of support here from fellow copd sufferers.Take care and wishing you a speedy recovery xx

  • Hello Jean, that is a major op and your bound to feel shocked especially as it was sudden. I would suggest you contact Macmillan Support, as they are specialists in cancer, including talk therapy and outcomes. They can be contacted on line. Were you not referred to a cancer specialist nurse by your hospital or doctor ? We can support you on here with our experiences but you do need practical help, including personal medical advice locally. Take things slowly, recovery will take sometime. I have COPD like many others on here and BLF helpline can give you advice the red balloon will take you to them. Speak to you again soon, take care and avoid infections at all costs xx

  • Thats great news that they think they managed to get all of the cancers begins the long slow rehabilitation process.

    As the others have said there ia a wealth of help and advice available to you. the main objective for you now is to get stronger after your op...then you can set about learning all you can to improve your lung function as it can be done....but at the very least you will want to stop it getting any worse.

    Its nice to have you on our site , and we all look forward to you getting stronger and making progress.

    Love Sohara

  • I have had the Macmillan nurses out to see me and the district matrons also hospital follow ups. I have really been well looked after and I am still being looked after. My husband is always with me so at times when I haven't been able to take on board what has been said he tells me. We have telephone nos that we can always use. Regards Jean x

  • Keep occupied as best you can with the little things that give you peace and reassurance so as to put that shock in its place.

    All the best

  • Thankyou for all your comments. I read on here everyday. I will keep you all updated. I got a new type of inhaler Incruse it's called. Actually it's just a inhale exhale I have had it two weeks. I use it three times a day. It helps to open your airways. Regards Jean.

  • Welcome and well done on your recovery to date . It will take some time but try to work your life around it.

    I have a paralyzed Diaphragm too. The shoulder pain may be the fact that you are using your shoulders to breath because of the action the diagram cuase negative pressure to pull the lungs down if this is stopped or reduced the shoulders will lift the lungs to help you breath. The muscles that are around the shoulder are not in the best position to do this and can cause the ache/pain.

    Be Well

  • Hello Offcut: I am curious to find out more on the shoulder pain due to diaphragm paralysis. I have been told my diaphragm is now "flat" instead of curved. I'm have severe copd and am on oxygen 24/7 and do quite well, however, my abdomen has really grown in the last 18 months (I am a very small petite 100 lbs 5' tall but with an extended abdomen). Very poor appetite and can only eat small portions. I keep wondering if it is my diaphragm causing me trouble. I alsvet sever shoulder pain especially later in the day. Anything you know will be appreciated . Thanks. Jackie T

  • It is very much a trail and error. What I have found that I had to rethink my breathing slightly and see what was working for me. Try to see were you can breath from IE: Chest, Stomach etc. also look at how you are breathing sometimes we are not using the air to it's best. Try deep slow breaths and slow release. If you have a oxymeter even better. when you are over doing it you may see the shoulders kick in. ( your body is all it can to get more air) Never over do anything if SOB and maybe a little panicky deep breaths and hold before release it brings you back in control more. (always easier said than done)

    As for the extended abdomen When I was in ICU for 32 days I lost 3 stone but not off the belly and when I do lose weight it never seems to get any smaller?

    What is Diaphragm Paralysis?

    Diaphragm Paralysis is the loss of control of one or both hemidiaphragms caused by a traumatic injury or disease process which decreases or terminates the impulse of respiratory stimuli originating in the brain. Causes of diaphragm paralysis include, but are not limited to:

    • Central neurological disorders such as a brain or brainstem stroke,

    • Spinal cord disorders such as syringomyelia or poliomyelitis,

    • Direct trauma to the phrenic nerve from surgery, radiation, or tumor,

    • Autoimmune diseases such as multiple sclerosis,

    • Demyelinating disease processes such as Guillan-Barré syndrome and ALS (Lou Gehrig’s Disease),

    • Phrenic nerve neuropathy, viral or bacterial infections, and idiopathic (ie, unknown) etiologies.




    Breathing pacemakers are indicated for patients with diaphragm paralysis who would otherwise be completely or partially dependent on mechanical ventilation so long as the phrenic nerve(s) and diaphragm(s) are intact. Patients with diseases in which the phrenic nerves have completely demyelinated, such as advanced ALS, or the diaphragm muscle is irreversibly atrophied,such as muscular dystrophy, are not candidates for diaphragm pacing.

    Be Well

  • hi you will find lots of help on here, ive only been on here myself for about 4 months and got lots of info, even one now about the red ballon. ha ha take care x

  • I have tried the half filled bottle with water and a straw. It makes you want to blow more bubbles.

  • Hi everyone well here I am 7 months nearly after my operation I am feeling a load better this weather is good though. I had a chest infection a couple of weeks ago so the doc put me straight back on steroids but this time he is bringing me off them slowly rather than taking them for five days and stopping. I have managed my breathing and doing everything at snail pace. I do get caught out on the odd occasion like when the toilet is calling and I have left it a bit late n have to get a big step in rather than a few little slow ones. I am very grateful to all the messages people put on this site as you know they are speaking from experience they have been through it. Thx again.

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